Saturday, December 25, 2010

merry christmas!

from our family to yours we want to wish you a very merry Christmas! gavin has really been on the road to recovery since his surgery a little over 2 weeks ago. closing out this 2010 and looking forward to what God has in store for us in 2011. we had a wonderful time celebrating Christmas Eve with my folks, josh and grandma von. it was her first time being with gavin and it was very special!
this morning we were up bright and early (thanks son!) and we had a beautiful time reading about the birth of Jesus in both Luke and Matthew.
this afternoon it's time to celebrate with the nikolin side while we have a mexican fiesta and open gifts and watch some games!
we just want to thank you all for your love, prayers and support of us during this very trying and difficult year. thank you so much for your comments along the way - they have really helped us feel your presence - making it just a bit easier to go through this.
looking forward to many more updates into the new year...

jeramy, tracee and gavin

Friday, December 10, 2010

surgery update

gavin's surgery went well. they ended up not taking him back until 12:20 to start the surgery. i hated waiting. i know hate is a very strong word but i hated it....wondering what exactly they were doing at each moment. first they put gavin to sleep with a mask, then gave him a shot in his lower back, similar to an epidural. then they started his IV and intubated him. she ended up going in through his belly button and then inserting the tube and she went ahead and fixed his umbilical hernia on the way out. score! killing two birds with one stone, i'll say!

the doctor came out once his surgery was over and told us that the anesthesiologist was able to take him off the ventilator and that we could make our way up to the picu and he would meet us there. we walked with the doctor as she told us how the procedure went....(i wasn't listening). all i cared about was seeing gavin. where was he? i knew he wouldn't be awake yet but i just had to see him and know that he was okay. we waited outside the picu doors for only a few seconds before we saw the anesthesiologist and a nurse wheeling him toward us. he was on a mask and the anesthesiologist was trying to stimulate him so that he would keep breathing. although they extubated him, they had him at 15 liters of oxygen. to give you some perspective, gavin (who has significant lung disease) is on 1 liter at home and our concentrator at home only goes to 5 liters. in fact, jeramy and i didn't even know that oxygen could go that high. we know enough about his sats that just by looking at the monitor we knew that gavin was still struggling. he was satting in the high 70s/low 80s for his oxygen and his heartrate was low (which is why he needed the continuous stimulation). the anesthesiologist said that if didn't begin to show improvment and wean down on his oxygen, it could possibly lead to reintubation......no!!!!!

thankfully, over the course of the evening, he was able to wean down to 10 liters and then down to 3 and this morning, he is back down to 1 liter. praise Jesus! indeed, He has protected gavin once again and He has brought us through another trial.

today, we have gavin on continuous feeds (for a time being, you have to do that with g-tubes). the doctors (and jeramy and i) don't want to change anything about how we were doing feeds at home so we want to try to reintroduce bottle feeds to him. he was eating about 2 ounces by bottle and then we gavage 3 ounces. we tried giving gavin a bottle about 30 minutes ago (just an ounce) but he instantly started gagging and spit it right up. it didn't even get into his tummy. the speech therapist was here with us and she told us to expect that since he was just intubated. his airway is now floppy and his vocal cords are more open than they usually are because of the tube so...it is probably going right into his airway. we are going to give it a few more hours and try again. please pray that he eats. we fear that they won't let us go home until he shows that he can take an ounce or two and the last thing we want is to stay another night here in the picu. there are sick kiddos in other rooms around us and g doesn't need that exposure.

thank you for all of your support and prayers during this time. we greatly appreciate it. gavin is such a fighter. he is inspiring. he has tubes, wires and IVs everywhere and all he wants to do is play! he woke up this morning all smiles. he was giggling and cooing like crazy. the doctors and nurses were all amazed. they all said it is not typical for them to see such alert (and happy) behavior for babies after surgery. i love that kid.

we will keep you all posted on his progress (hopefully from home)! thanks again for the prayers.

i think it is very obvious that there is One who is making all of gavin's progress possible. to deny that, would be ignorance. he's not just a "lucky kid". i get mad when people say that. his progress has nothing to do with "luck" or "stars aligning". he is a little boy loved by the Heavenly Father-who has a plan. gavin has touched a lot of lives already. he's touched mine. has he touched yours? i hope so.

let us never forget that God is good....all the time.


Wednesday, December 8, 2010

on bended knee

gavin's surgery is scheduled for tomorrow at 11:30. we check in at 9:30 where we will meet the anesthesiologist and get started. gavin will need to be intubated and put on the ventilator for the surgery. this is obviously our biggest prayer request because of his lungs. we pray that there are no complications coming off the ventilator and that gavin is able to return to the oxygen that he is on. a kiddo like gavin with his lung disease has the possibility to struggle coming straight off the ventilator since his lungs will love the break. fortunately for us, it is not a lengthy surgery. we are grateful for that. we are also grateful for the surgeon that we have. she is the best out there. in addition, we have a top pediatric anesthesiologist who also does a ton of work with nicu babies so he's use to the more critical, tiny babies.

we will be staying a minimum of one night in the picu. hopefully we will be able to come home on friday. Jesus, hear our cry. hear our plea. please hold our baby once more and get him over another hurdle, as You have already done so many times before. we trust in You.

please please pray for me and for jeramy as well. i know that we are both dreading being away from our baby tomorrow....even for a bit. i know that every mother out there can relate to the pain they would feel having their baby put under anesthesia. i think i would feel a thousand times more confident going into this if gavin's lungs were not as bad as they are. it makes me nervous...nervous to the point that i feel sick today. the good thing is that this kid is the toughest kid i have ever met and it is truly inspiring.


thank you for praying. specifically, we would love it if everyone could join together at the time of his surgery tomorrow and pray. 11:30. be there. be praying. our God is an awesome God.


Wednesday, December 1, 2010

family

here is a picture from our first family photo shoot that we had. my dear friend natalie montez-miller took them. she is one of the most talented photographers in arizona and we were so blessed to get to spend this day with her. check out her site if you get a chance. her link is to the right (or you can go to photosbynatalie.com. this picture melts my heart...more to come soon!

mommy and daddy love you sweet pea!

Tuesday, November 30, 2010

surgery

our worst fear has come true. gavin has to have surgery. we have made it so far without surgery for this little guy and for that, we are blessed; however, we are experiencing a wide array of feeding problems with this precious little boy. i had to place his feeding tube back in last week because he was not getting the amount of food he needed to gain weight. in fact, he was losing weight. gavin cannot lose weight. it compromises a variety of things for him that tend to cause everything to spiral out of control. his breathing becomes compromised because he doesn't have the nutrition he needs and it requires him to work harder and he doesn't receive the calories that he needs in order to grow healthy lung tissue. ultimately, our overarching goal is for his lungs to heal and without proper nutrition, they are unable to do so.

the feeding problems began for gavin about 4 weeks ago when he began to teethe. as exciting and "typical" as teething is, it presented some problems for gavin. all children develop excess saliva in their mouths as a result of teething; however, for gavin, the saliva caused him to gag a lot. because he was intubated for so long (2 and a half months), he has a condition called esophogeal dismotility. this means that he doesn't always feel the sensation that there is stuff pooling in the back of his throat or slightly down his throat and he won't swallow as often as he should like other children do as an every day reaction to that sensation. so he would gag. the problem with the gagging was that his ng feeding tube goes down his nose and into his stomach and each time he would gag on that excess saliva, he would throw up his ng tube and any food that was in his stomach whether it was a partial or even whole feed. it was so discouraging to us because feeding gavin is already a huge challenge in our household and it is a time that is stressful on us and on gavin. in an instant, 30 minutes of feeding could be wiped clean. so.....gavin wasn't getting the volume that he needed. i had to keep reinserting his ng tube and my poor baby just hates that (do you blame him??). we tried for a period of time to just feed him without the tube in and hoped that he would just take enough volume by bottle (since he is on high calorie formula-30 calorie). but, his lungs can't do that much work. it is too hard for him to eat that much and we see drastic increases in his work of breathing and his oxygen requirements.

after talking with doctors throughout the past week, we have collectively come to the conclusion that the answer to solving this problem is to have a gastric tube (which is also called a g-tube) surgically inserted into his stomach. the surgery will take about an hour to an hour and a half. now, i am well aware that kiddos have surgery every day. i understand that. but kids with lung disease don't. putting gavin on a ventilator seriously compomises him. the process of intubating a kid like gavin is difficult because gavin's lungs will LOVE the break and as "typical" kids are extubated right off a ventilator after surgery, gavin might not be as easy. as many of you, who keep up with our blog have read, it has been a challenge to get gavin to the place we are today. we don't want any setbacks.

jeramy and i are both ready for the g-tube. we know that it is what gavin needs. we know that it will give him the best opportunity to grow and develop without the stress of having to eat. we will still be able to give him bottles which is great for his development. we are looking at it as a short term solution to our problem and we hope and pray that this will not be a long process for him. hopefully, this is exactly what his little lungs need. that way, we can continue to play with him and do more developmental things with him. right now, feedings consume our days and make him so tired that he doesn't have strength for much else.

we are trying to make it until next monday when we have our consult with the surgeon. that means the surgery will likely take place tuesday or wednesday of next week. please pray that between now and then gavin's ng tube can stay in (that is how we are doing all of his feeds to give him a break). pray for skilled hands from the surgeon. pray that the anesthesiologist (who i hear is the best) can possibly do a partial intubation-just to the vocal cords and avoid the ventilator. pray for a fast recovery for our little sweet pea. and please please please pray for me and pray for jeramy. we are struggling. the battle seems never ending. we feel like we are wandering in the desert and we have no idea how long we are called to be out here. it is so easy to lose hope when there appears to be no end in sight. it is easy to lose hope when you can't feel His peace. i pray everyday for the Holy Spirit to intercede on my behalf. i am weak. i know God's Word reminds me that when i am weak, He is strong.

i'm sure glad someone is...


Saturday, November 27, 2010

thanksgiving

so many things to be thankful for this year. i am thankful that i have a little boy that i get to hug and kiss, that i get to tuck him into bed every night, that i get to watch him grow and learn new things, and that God spared his life. i am thankful that i have a wonderful husband to walk through life with. there is not a doubt in my mind that what we have gone through would most definitely break most marriages. jeramy is my angel.

we had a great thanksgiving. we had my parents and sister over to our house, along with jeramy's parents and his brother, josh. unfortunately, we were unable to have his sister, her husband and their precious kids join us because of the risk of possible exposure to gavin but they were missed indeed. we also missed my sister's husband, Ryan who is a firefighter and worked that day :(

i loved hosting thanksgiving. i made my first turkey this year! i brined it for a few days and did a dry rub on it with a variety of herbs and seasonings. so yummy, so tender and juicy! the recipe is a definite keeper...go food network! we had so many yummy things on the menu and i just love going overboard on the decor and with the presentation of everything! :) jeramy knows that if i host something, it is going to be overdone for sure. is there any other way?? ha ha!

it was so nice to have family here at the house and to enjoy gavin at this very fun stage he's in. he talks/babbles a ton! gosh he makes the best noises. we praise Jesus for his progress every single day. of course we had to get him into a cute little thanksgiving outfit! i can't help myself. thank you mom for his onesie...so adorable! here is a picture of the little turkey! :)
we feel so blessed beyond belief. 24 week babies don't survive everyday, let alone with the outcome that gavin has had. no brain bleeds, surgeries, or physical deformaties. he is a miracle and this thanksgiving reminds me of my friends whose precious little babies-some 24 weeks old and some older-didn't survive. i think of each of you everyday. you are always in my prayers.

let's all remember to be thankful for our children this year.......may we never forget how blessed we are.


Tuesday, November 23, 2010

gavin!

dude!

mommy and gavin when he was in the picu (not super recent-don't worry)

gavin sleeping

gavin and his aunt christy

gavin and his little tool man outfit

gosh, he's cute.....

another day, another doctor

the past few days have been eventful to say the very least. i mean...for those of you who read our blog regularly, i am certain you are far from shocked. it seems as though the calm always comes right before the he storm. as i said in the last post, gavin's feeding tube was out. yay! well, we had tried taking it out for a bit but he just wasn't getting the volumes that he needed to gain weight so we decided to put it back in. gavin also started teething...which is AWESOME. however, along with the teething comes a lot of excess saliva and since gavin has a tough time sensing that there is stuff in his throat all the time (because he was intubated for so long), he has started gagging randomly when he gets too much of it back there. the only problem is, if he anything in his stomach (formula), it is going to come right up. the tube that goes down his nose and into his stomach doesn't weigh a lot and when he gags, even the slightest, he starts throwing up and then can't stop and ends up throwing up his entire feed. so....that has been happening about once a day (sometimes more). gavin hasn't been gaining weight because of this and he needs to gain weight in order for his lungs to grow and develop. we would love to be able to give gavin all of his volumes by bottle (which we thicken anyway) but he doesn't have the strength to eat that much. he also seems to be getting some oral aversions since he has been throwing up so much lately...poor baby! it just breaks my heart.

we went to see his pulmonologist yesterday and his pediatrician today and we were referred to a great gastroenterologist in scottsdale. we will be meeting with her next week to come up with a different game plan for gavin. right now, we don't know what that is going to be. it could be a simple fix (hopefully) like a different high calorie formula. we already have him on super high calorie formula though. we know it isn't a lactose thing so at least we've ruled that out. another thing she might do is an nd tube instead of an ng tube. an nd tube goes a little deeper and is weighted a bit more and hopefully wouldn't come up as easy as an ng tube. the only problem with that is that placement has to be checked with an xray. i love being able to insert his ng tube and check placement if he needs it. the last thing we need this winter is to be frequenting hospitals around the valley! :) one thing we want to avoid is a gastric tube, which is surgically inserted into his tummy. i just don't think we are to that point quite yet and we definitely want to explore all of our options first.

gavin gets his first synagis shot tomorrow, which is the rsv antibody. we are looking forward to getting some of those under our belt since there have already been cases of rsv in the valley. gavin cannot get rsv. as blunt as this sounds, it could kill him. we ask that you pray against that specifically please.

i will be posting some new pictures of gavin tonight! be sure to check back in!


Monday, November 15, 2010

the smell of rain

a wonderful friend of mine emailed this story to me. my friend is also the mommy of a micropreemie. when you read this story, please remember that gavin AND my friend's baby were even tinier than this. gavin was 1 pound 3 ounces. my friend's baby was 1 pound 2 ounces. miracles happen everyday. our little boys are living proof of that. this mom's story about her little girl is so touching. i hope to hear Gavin say something like this one day because there is not a doubt in my mind that God was with him when we couldn't be....


The Smell of Rain

A cold March wind danced around the dead of night in Dallas as the doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news. That afternoon on March 10, 1991, complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature.

Still, the doctor's soft words dropped like bombs." I don't think she's going to make it," he said, as kindly as he could." There's only a 10-percent chance she will live through the night, and even then, if by some slim chance she does make it, her future could be a very cruel one." Numb with disbelief, David and Diana listened as the doctor described the devastating problems Dana would likely face if she survived. She would probably never walk, she would possibly never talk, she would probably be blind, and she would certainly be prone to other catastrophic conditions from cerebral palsy to complete mental retardation, and on and on. 'No! No!' was all Diana could say.

She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four. Now, within a matter of hours, that dream was slipping away. But as those first days passed, a new agony set in for David and Diana. Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangled tubes and wires, was to pray that God would stay close to their precious little girl.

There was never one specific moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Dana turned two months old. her parents were able to hold her in their arms for the very first time. And two months later, though doctors continued to gently but grimly warn that her chances of surviving, much less living any kind of normal life, were next to zero, Dana went home from the hospital, just as her mother had predicted.

Five years later, when Dana was a petite but feisty young girl with glittering gray eyes, she had an unquenchable zest for life. She showed no signs whatsoever of any mental or physical impairment. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story.

One blistering afternoon in the summer of 1996 near her home in Irving, Texas, Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, "Do you smell that?" Smelling the air and detecting the approach of a thunderstorm, Diana replied, "Yes, it smells like rain." Dana closed her eyes and again asked, "Do you smell that?" Once again, her mother replied, "Yes, I think we're about to get wet. It smells like rain." Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, "No, it smells like Him. It smells like God when you lay your head on His chest."

Tears blurred Diana's eyes as Dana happily hopped down to play with the other children. Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.


one day i overheard jeramy talking to gavin. he said, "gavin, what does He look like? what does Jesus look like? i bet you've seen Him, haven't you?" jeramy said this to gavin with tears streaming down his face and i will always remember that moment. we always prayed for Him to hold gavin in His arms when we couldn't, when we weren't able to even touch him. i know He did. and i know that gavin felt it.

we love you all so much. gavin is doing well. he weighs 14 pounds and currently has NO feeding tube! yay!! please pray that he can continue to take his volumes and put on weight so we can keep it out. also, please pray for g's health during this cold/flu season. pray that we stay out of the hospital and that we ALL stay healthy!

blessings,


Friday, October 29, 2010

point of view

yay!! gavin qualified for ddd (developmental disability). this means that g will be receiving services in our home instead of having to travel to them. these services include physical therapy, speech therapy (they work on feeding goals), and we also get a developmental service coordinator. these three people will come to our house both separately and sometimes together to work with gavin. that's three hours of services each week! praise God! i am so confident that gavin will continue to make progress as we move forward! he's such a rock star. at our meeting on monday, i received a packet of papers for gavin. if there's one thing i have discovered in this process, it's paperwork, paperwork, paperwork......oh, and PHONECALLS! I have taken on a "browse" type approach to the what i deem the "unnecessary fillers" in each of the packets we receive. however, one paper caught my attention this week. it was titled, "welcome to holland". for all of you wondering what it has been like mourning the loss of what "we had originally planned" for ourselves, this article written by a parent in our shoes perfectly depicts what it is like. because as i sit here today......our life is perfect.........just as He had planned it to be.


Welcome to Holland
By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with special needs-to try to help people who have not shared that unique experience to understand it. To imagine how it would feel...it's like this..........

When you're going to have a baby, its like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean Holland?? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you'll stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you must meet a whole new group of people you never would have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around and you begin to notice that Holland has a lot to offer. Holland has windmills.....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy.....and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say in your head, "Yes.....I know how great Italy is. I had planned to go there too."

And the pain of that will never, ever, ever, ever go away.......because the loss of that dream is a VERY significant loss. But.......if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very wonderful things.......about Holland.


i just loved that!!! i think it is a great picture of where i am at, personally. gavin is a miracle.....nothing short of it. there is not a doubt in my mind that he will continue to get stronger and stronger. i have faith in a very big God to get us there. however, i know that the road to getting him there is a long one. it is a road that is filled with appointments, therapies, and possible surgeries. my job as his mommy is to do EVERYTHING i can to get as much support for him! the earlier the better! that's exactly what we are doing. and we will continue to do it.....

we, as always appreciate your prayers. and honestly........i ask sincererly for sensitivity. we have very fragile moments. this has been a very tough time for us. although we LOVE our son more than words could ever describe and although we have grown accustomed to this "way of life", we are still mourning the loss of what many consider as "typical" and "normal". thank you for loving on us during our sad days and rejoicing with us during the happy ones. lately, there have been more happy ones. i'd say that's a pretty good thing :)

all my love,




ps. the boys taking a snooze...


Friday, October 1, 2010

it's a new month

we made it out of september. i celebrated my 32nd birthday on the 28th with family (at home) as we continue to work to get gavin healthy. since i wrote last, gavin had to be taken to the ER last sunday night because he was choking and couldn't seem to catch his breath. gavin has a feeding tube in his nose right now to help his lungs heal because he had been aspirating all of his feeds. basically every time he would swallow his food would end up in his lungs making it that much more difficult for his lungs to heal! as part of his cares, we are to check his tube placement in his stomach by measuring it from his nostril and listening to his belly with a stethoscope by injecting a small amount of air. well...gavin was experiencing some bad gas and was very uncomfortable so i injected some gripe water (designed to relieve colic and upset stomach) into his tube without thinking to check. within a minute or two of giving it to him, he started to sputter and choke and we had to immediately pull his feeding tube. once he started to settle down, we had  a nurse friend of ours come by and re-insert a new tube. everything seemed to be ok until his feed about 11:30pm. within a few minutes of feeding him through his tube he began thrashing and was visibly agitated. we quickly pulled his tube again and gathered everything together - got him in the car and headed to the ER. we now keep a bag ready to go at all times so we can head out the door quickly if we need to.  not what we want to do but we've learned!
i prayed that God would go before us and help us with the right dr.'s, nurses, etc. we got him in, checked him out, took an xray and then had him admitted overnight for observation. he was up to 2 liters on his oxygen at the time we brought him in.
thankfully, gavin didn't have to be IV'd or any blood drawn for this stay! however, he had a very rough night as they didn't re-insert his feeding tube until morning and he just cried all night with tracee because he was hungry. i didn't experience that part as i went home about 3am. poor guy! poor tracee!  important note: the PICU sent us home with the wrong tubes for gavin's feeds - so the one that we had re-inserted at home was causing him agitation. doesn't that just fit our journey?? we were upset with the PICU staff that didn't have the knowledge to know that what they gave us for gavin isn't what is to be used.
we were able to take him home on monday afternoon and he had been weaned down to 1.5 liters at time of discharge. before we left on monday, our pulmonologist took a sinus xray to double check what was going on for gavin. within a few hours of getting him home monday we had him turned up to 2 liters again. it just didn't make sense how he was doing so well at the hospital and now was struggling again at home?
we got a call on tuesday to determine that gavin had a sinus infection! the radiologist who looked at his sinus xray determined that his maxilary glands were either so blocked up that they couldn't be seen or they were extremely under developed. they called in a 10 day antibiotic for gavin and he has been on it now for 3 doses.  during this time tracee and i have been suctioning out all kinds of gunk that saddens our hearts because we know how hard it must be for gavin to breathe with this in the way, and his weakened lungs.
i am attaching an email dialogue i had yesterday with some dear family friends regarding this:
Hi Jeramy and Tracee,



This morning in my devotions I came across this verse in Romans and I had to share it with you.


Romans 15:30 - "I urge you, brothers, by our Lord Jesus Christ and by the love of the Spirit, to join me in my struggle by praying to God for me." The footnote says - "Prayer is...a weapon in all believers' armor as we intercede for others who join in the fight against Satan." I could also add....In the fight against weakness, against discouragement, against worry, against anxiety, against exhaustion, etc., etc. Whatever the struggles are, Gene and I stand with you in prayer.


Our small group Bible study meets on Wednesday nights. It's an awesome group of mature Christians. We have all been praying for Gavin's development, and your stamina and spirits. Know that you are loved and supported. May God use you as a tremendous witness to the whole hospital staff as they watch how you deal with all of this stress. I pray for God's supernatural strength when you just don't think you can go on.
With our love,
          Gene and Norma

Here was my response:

Norma,



I have tears in my eyes right now as I read this. I am feeling a little under the weather today. Fatigue for Tracee and I is an understatement. Nevertheless, we continue to push on. Thank you for the prayers for me and my family. They are so coveted and so necessary with the turmoil we continue to endure.


Gavin has a sinus infection right now that has really been taking its toll. You just can’t imagine the pain it brings Tracee and I to have to perform various medical procedures (like power suctioning his nose and mouth) when he just cries and struggles to breathe and looks at us with fear in his eyes like “why are you doing this to me???”


I often put myself in Gavin’s position and God is us and I’m crying and asking: Why are you doing this to me?”


Thank you so much for your donation to Gavin’s account – we so appreciate it and know that it goes to providing for his needs and the continued unexpected turns we take with his health care.


I feel encouraged hearing that there are people out there praying for us by name and lifting us up. There’s a battle that rages on and the spiritual warfare that we are experiencing is real and rough. The nights are hard – Gavin usually has his toughest times on nights and weekends when most of our life lines are unavailable.


Thank you to you guys – we love your hearts for us!!
this morning it felt as if gavin was starting to feel some relief from this infection. "let the morning bring me word of Your unfailing love for i have put my trust in You." amen. we are looking forward to being on the other side of this sickness and for him to feel better and not have to work so hard. tracee and i continue to focus on being thankful for each other and for gavin. i hope this update finds you all blessed and well. thank you for helping lift our hands up to God during this time like the people did with moses.
one final thought: i loved reading the comments from the last post as so many of you shared how this blog was passed along to you from someone else and how groups of you lift us up in prayer along the way. that is so encouraging! it overjoys our hearts to know that and it seems to help ease the burden in some supernatural way.

jeramy

Monday, September 20, 2010

the hits just keep on coming

it has been so long since i had a chance to write last let me first say thank you for continuing to check the blog and having faith that it will, at one point, get updated again! gavin has been in and out of the hospital - we had him home from the NICU the first time for 30 hours, then rushed back to the ER and readmitted to the NICU for another 16 days - then home again with us for 10 days and back by ambulance to the ER at Banner Samaritan before being transferred to the PICU at Scottsdale Shea on September 9th.
we brought gavin home (again) last wednesday the 15th.
we had another scare over the weekend as his heart rate was tracking in the 180/190s and i couldn't seem to bring it down. he has had horrible gas from his feedings and so with that and his obvious lung disease i called everybody i could think of (pediatrician, NICU, PICU...) and the bottom line is that i didn't get a lot of direction as it's all one big cat and mouse game because nobody wants to step on anybody else's toes with telling us what to do for gavin other than "you might want to just take him into the ER."
for us, we feel torn either way: we take him in and he gets IV'd, poked prodded and a bunch of tests run plus being subjected to potential illness VS. leaving him home with us and keeping him there too long to where we put him in harms way because has no lung reserve. tracee and i just cried on the couch saturday afternoon as we experienced this dilemma. we are worn out and always on edge with what to do for him.
tracee's parents came over and helped us keep an eye on gavin saturday night. we just prayed and cried out to God for mercy and grace. tracee concluded that we should put him down and let him swing for a bit to calm down. her mommy intuition was good and gavin began to settle down and his heart rate started to come down into the 140/150s range where it should be for gavin.
he has been fighting a cold for the past few days and i think i already mentioned the gas but it really irritates him and puts him on edge for hours at a time.
tracee and i are shifting with gavin throughout the night: i typically sleep from about 10 - 1am and then she goes to sleep from about 1am - 7am and then i go back to bed for a few more hours.
saturday night, tracee was hit with her epilepsy condition that comes on when she doesn't get enough sleep and/or is stressed out. it makes her shaky and causes her to drop things. cleary with that going on, she wasn't able to care for gavin so i stayed up with him all night and allowed her to get about 9 hours of sleep. that was exactly what she needed as she felt better by 1pm on sunday afternoon. once again tracee's parents came over to help relieve us so i could go back to bed - i slept from 10am - 3pm to get caught up.
here it is monday morning and i'm back to work and tracee is home with the day nurse getting ready to take gavin to his doctor's appointments at the hospital to see the developmental pediatrician. everyday it is something: pulmonologist, pediatrician, physical therapy, evaluation appointments, etc...
pray for relief for us. pray that an end would be in sight and that we would be able to get the break we so desperately need. we are both very frustrated and ticked off at this point. i don't know what else to do and a lot of times i have no words for what we are going through. it's so painful to watch your bundle of joy suffer in front of your very eyes. we pray for very real needs like normal breathing with normal lungs. we don't pray for trivial things like a new car or a really great vacation.
i'm not sure what post traumatic stress disorder looks like but i can imagine that tracee and i are dealing with it. i can't imagine that it is any good for your body to live off of adrenaline for 6 month's straight but that is what i've been doing.  WE PRESS ON! we don't have a choice - we are fighters and we will push through the crap and get it done. gavin knows that when he cries for mommy and daddy that we are there and that we will be there every step of the way.



jeramy

Tuesday, August 17, 2010

ready...set...go: almost...

once again i apologize on the delay with the blog. we have had a whirlwind of activity going on since the last post. gavin was discharged from the hospital on thursday, august 12th at around noon. that momentous occasion for us was short lived. by friday evening gavin's work of breathing had increased and he wasn't settling down. as midnight approached it became apparent that we needed to take gavin to the ER as i told tracee "i don't feel equipped to be able to care for him at all." gavin was sent home on 1 liter of oxygen and by this point we had him turned up to 3 liters en route to the hospital. we were able to slide past all of the sick people in the ER (which was a huge priority and blessing for us) and within minutes people were running around and care began. gavin was very gray in color and his lips and extremities were beginning to turn blue. based on how he looked the ER doctor wanted to intubate him to which we fought and asked them to wait a few minutes. because gavin's baseline of breathing is so different than a regular baby he has a different threshhold. gavin had been turned up to 5 liters of oxygen and his sats were not coming above 78-80. It became apparent that things were seriously wrong and  i could see the scared look in his eyes. both tracee and i began to freak out although mine lasted much longer than hers. i thought i might lose my little baby boy right there on the table as people scrambled around and they brought the coding cart into his room "just in case."
at the suggestion of someone from the NICU they gave him a treatment of Albuterol and that immediately dialated his airways to where he could get the oxygen he needed. praise God!!! some of my fears were then relieved and i burst into tears when we saw a couple of staff members from the NICU who were down to grab gavin and take him back up to what we have come to know as a very safe place. because gavin had only been gone a couple of days, they were able to readmit him to the NICU. thank God!! these are the people who know everything about gavin and fight for gavin and know how to care for gavin. we were at peace knowing we didn't have to worry about explaining ourselves to a team of people who didn't know gavin!  they place gavin in an incubator and rushed him upstairs to an isolation room in the NICU and immediately got him hooked up to CPAP. side note: gavin hates CPAP and yet he didn't even care. he flopped his arms back behind his head and probably felt like a million bucks knowing he could finally breathe. that's a hard thing as a parent. we never want to relive what we went through a couple of days ago. i know that our minds and bodies are going through shock. our brains have sort of cut us off from the traumatic pain we have been going through as we attempt to unpack everything.
gavin is back in the NICU for round 2. we don't have a go home date in sight yet and everyone is on board with tweaking his cares so that we don't have a round 3. we need better monitors for home than we had before. we need better support at home than we had before. we need humidified and purified air - where we didn't have it at home before. tracee and i have to wrap our minds around the fact that we cannot just normalize this situation. we are having to mourn the loss of a typical birthing plan, typical delivery, typical baby and typical routine with baby once home. it's hard. it's painful. we are going to have to live in a bubble for months as it is almost RSV season. while RSV can really slow down a full term, healthy baby, RSV can kill gavin.
please pray for us. we need support on so many levels. if you feel led to give to us than we have an account set up for gavin at wells fargo. if you feel led to help out with meals we need to have that up and running again. this is a time in our lives where we are needy. i don't like to be in this position but i don't have much say in the matter apparently. please continue to comment and message us and reach out on facebook, etc. we love reading your comments and affirming us as we persevere.
may you all continue to be blessed in your lives and may our story and gavin's life touch you in some way or another.

jeramy

Monday, August 2, 2010

he'll be comin around the mountain when he comes...

it's been quite some time since the last post and for that we are sorry. we had to move due to our rental being short sold and so we have been scrambling over the past month to find a new home. as God would have it, He provided a great new place for us to live in and it all came together in the last hour as we finalized everything with some good friends of ours about 10 days before we had to be out of our old place! they are looking to buy a new home and they suggested out of the blue "why don't you rent our place?" well...we took them up on it and everyone kicked it into high gear to make it happen in record time. we began painting their whole place (tri level home) on thursday, july 22nd and worked late into saturday night while tracee ran off for gavin's baby shower that was hosted at some of our wonderful friend's home. last sunday we gathered some troops and rented a u-haul and got everything moved over and in. the good news is that our new place is only 5 minutes from our old one and it keeps us in the same basic area which we love! the bad news was that it was 111 out and humid so we were just getting killed all weekend.  since then it has been non-stop with projects all over the place to get things in order!  both tracee and i have been working tirelessly to make this new house a home and by gosh i think we are actually getting there.
in the midst of all of this, i continue to go to work and we continue to make our trek over to the hospital to see gavin. this thursday will be 4 months since he was born. let that sink in for a minute...4 months of visit after visit and hour after hour spent at the hospital to be with our precious baby boy. tracee and i determined we have put over 10,000 miles on our car just in trips to the hospital and back.  WE NEED A VACATION!!
gavin is doing awesome - he is now 6 pounds 15 ounces and taking over 2/3 of his daily feeds from the bottle. he is getting 60mL's of food every 3 hours and they are still pumping him full of 30cal food (rocket fuel) to help him continue to grow due to the fact that he expends sooo much energy to breathe!  since we wrote last gavin has moved completely off of CPAP and gone to the high-flow canula where he has been getting high pressure oxygen through the little prongs in his nose. this has been so exciting for us because he has absolutely loved being off of CPAP...he hated that mask! he is a much happier baby now and spends most of his time eating, sleeping and breathing...although he does find some time to play with us! he is almost 42 weeks now so he's a mature baby :-). gavin started at 4 liters of oxygen and has been weaned all the way down to 2.5 liters with continued changes on the way.
we ask for your diligent prayers to continue for his eyes as we need them to be fully vascularized. because he is on oxygen and won't come home on blended oxygen (like he gets in the NICU) they will have to switch him to 100% at a lower flow and that can mess with his blood vessels in his eyes if he isn't fully vascularized.  so....it's very important to us because we aren't sure if we can bring him home unless his eyes get to where they need to be and that's the question mark right now.
all in all, we are so pleased with gavin's progress and we thank and praise God for what He has done and how much He has healed gavin over his short, but eventful, little life. he is such a fighter and we can't wait to show him off to everybody we see - especially our faithful prayer warrior friends!!

jeramy

Monday, July 19, 2010

perspective

i just got home from the NICU a bit ago this evening and i caught something on TV that really made me stop and think about what gavin has had to go through. it was about people's attitudes that face adversity and just how positive some of them are.  tonight as we were visiting with one of the nurse's and one of the nurse practitioner's i really understood that gavin's lungs are the worst lungs they have ever seen on a baby. wow. we knew they were bad and "some of the worst" but didn't really understand the magnitude being where we are now. my sister gave birth to a beautiful and healthy baby boy name asher. he was 7 pounds 4 ounces born just before 2pm. he's camped out just across the hall from gavin - just outside the NICU. it is fun to bounce back and forth to see both of these little boys and to really see the different paths they have taken.  check out gavin vs. asher's footprint:

gavin was to be born this thursday. it's hard to even imagine tracee still pregnant right now, preparing to have him. needless to say, that didn't happen and we received our very critical bundle of joy three and a half month's ago. he has fought and fought since day 1 to get to where he is now. i don't want to discount that at all. i am so proud of my son. i wonder if i have that kind of fight and drive like gavin does?  i sure hope so. it's inspiring and it's touching and it makes me want to be a better dad and a better husband. i love that my son has been teaching me...aren't i supposed to do that for him???!!!
we forget. i'm not sure if we can help it - we just do. i think that is why Jesus had his disciples partake in communion and He told them "do this in rememberance of Me..." we need to be reminded. it wasn't too long ago that we coined the phrase about 9/11 "we will never forget." but...the reality is that a lot of us have forgotten to some extent - we certainly don't feel the same today as we did on that dreadful day, or as we did even a week later when patriotism was at an all time high. hey, it is what it is - but i REALLY don't want to forget about what we have gone through and what God has taught us and how He has used gavin's life to shape who tracee and i are today. gavin is a special little boy but i don't think i had to tell all of you that, right?

ps. gavin went to all day high flow nasal canula today and is no longer on CPAP! pray that God will sustain him and this gets us 1 step closer to the door!!

jeramy

Wednesday, July 14, 2010

my two blessings

thank you Lord...i'm the luckiest girl in the world!



joy comes in the morning

the pediatric opthomologist came to the nicu yesterday to do gavin's eye exam. he found that the blood behind his eyes is gone and that, although he still has stage one and stage two ROP, it appears to be beginning to correct itself. PRAISE JESUS! the nurses and doctors are amazed that it is getting better already. they told us to expect it to get worse before it got better. i know with all my heart that God was in the center of this. this was no medical miracle. this was no "lucky situation". this was God. this was His choice and His timing. i want to personally thank each of you who prayed. please recognize that God hears our prayers and He answered them. from this point on, it is very important that the nurses closely monitor gavin's oxygen levels and saturation to ensure that the ROP continues to correct itself. the doctor will see him in another two weeks to check on the status of the ROP and to see if his eyes are vascularized. once they are fully vascularized, the ROP is no longer a concern. i called jeramy immediately after the doctor left and cried tears of joy with him. as you all are well aware, this has been such an emotional journey for us and this really was one of our last hurdles before getting ready to go home (aside from some hernia surgeries prior to discharge). i came home from the hospital in the afternoon and was actually able to get some much needed rest. thank you Lord.

oh, here is a picture of gavin bundled up in his big boy crib...he's 5 pounds, 5 ounces today!


today has been a great day...gavin is 100 days old! my brother-in-law, matt, made him a onesie that said "i'm 100 days old". it looks adorable on him. i will post a picture later tonight! he was being so funny today. when i got there, he was in his crib looking at his mirror. he was totally playing all by himself!!! he was making a bunch of little noises and was wide awake. i was laughing hysterically! i realize what a blessing this little boy is and what a miracle God has given to us. it also shows me how days in the nicu can be so scary one minute and completely joyous the next. i guess i'll just go with it. :-)

"when our days are filled with crying, we can trust that God, in time, will again bring laughter."
~janette oke


Friday, July 9, 2010

no accident

today has been hard. really hard. I slept very little last night and my attempt to take a nap this afternoon failed. i cannot seem to stop crying today. gavin had another eye exam yesterday. he has stage 2 ROP (retinopathy of prematurity). since he was so premature, his eyes hadn't yet fully vascularized. the ROP means that his blood vessels have some abnormal growth. the stages go from 0-5. stage 4 and 5 are basically retinal detachment (blindness). the doctor that he sees for his eyes treats ROP at stage 3 before it even gets to those levels. if his ROP gets to a high level 3, the doctor would have him transferred to either phoenix children's hospital or st. joe's for laser surgery where they would cauterize the blood vessels where they are abnormal/tangled in hopes that they would grow straighter. so, we are on our knees praying for yet another miracle. sometimes, stages 1, 2 and even 3 can correct themselves. we pray earnestly for that.

i came home from the hospital this afternoon in hopes of getting some rest. but like i said, my attempt failed. as i was sitting on the couch crying, i saw our Bible that jeramy had left open this morning. it was opened to the book of luke. i kinda found that odd at first since i typically associate the book of luke with Christ's crucifixion and resurrection. but as i flipped through the pages, i saw miracle after miracle after miracle. i read the words aloud in the quiet of our home. "the blind receive sight, the lame walk...the deaf hear, the dead are raised". i read numerous chapters aloud in the book of luke today and it reminded me that the God we serve still performs miracles. we have watched Him perform miracles already. so, we ask for another. we ask on bended knee for gavin's eyes to heal, without surgery. please join us in that prayer. his next eye exam is next thursday, july 15th. let's all join together and pray that God performs a miracle on our little boy's eyes. it is not out of His control...i trust that.

i am weary today...weary to the point where i can't even sleep. as i was reading through luke, i came across chapter 7, where Jesus raises a widow's son from the dead. it said "as He approached the town gate, a boy was being carried out - the only son of his mother. And a large crowd from town was with her. when the Lord saw her, His heart went out to her and He said, "don't cry." i believe with all my heart that this was no accident. it was the message i needed to hear today.

i serve a compassionate God. He hasn't failed me yet...


Tuesday, July 6, 2010

one day at a time

gavin was 3 months old yesterday. i can't believe it. well, actually, i think i can. so many people think that time has flown by and they can't believe it has been that long, but we feel like it's been even longer. time is really beginning to crawl in the nicu. this is the point in the stay where parents of long term nicu babies tend to develop nicu-itis. oh, we have it for sure. we so desperately want him to be home with us and the fourth of july really hit me for some reason. as we gathered with family and friends to watch the fireworks, a part of me felt so empty. it was obvious to me that something was missing. there were strollers everywhere in the park as families around the valley gathered to enjoy this holiday together. as i watched the fireworks, tears came to my eyes as it hit me that gavin was missing it. now i know that gavin is a baby and would have more than likely slept through them, but still....he would've been there. this was our first "holiday" with a baby and we had to celebrate without him. however, i look forward to thanksgiving and Christmas when i know he'll be here.

gavin is making a ton of progress lately. he is currently on his fifth round of steroids and will remain on steroids until he gets to a reasonable amount of oxygen. the problem we face is that gavin loves his steroids. he makes great progress while on them but has a tendency to take steps back when they take him off. as we faced reintubating him and putting him back on the vent a few weeks ago, steroids were the clear choice. he is able to do developmental things now that he isn't on the vent. on cpap, he is able to have physical therapy, occupational therapy, and even massage therapy. also, jeramy and i are able to provide ALL of his cares for him, just as if he was at home with us. it's crazy how excited we get that we get to pick him up by ourselves now, put him back in bed by ourselves, and even give gavin baths...real baths! we are overcome with joy when we get to spend that time with him!

so, like i said, gavin is on cpap (the mask that helps his lungs stay open as it provides pressure) where he does all the breathing by himself. yesterday, they started sprinting with him. that means that for 3 hours a day, the respiratory therapists put him on high flow canula. if you've been keeping up on previous posts, you may remember that when he is on high flow canula, he can begin to nipple feed from a bottle. we are unable to do that on cpap because it can cause him to aspirate. yesterday, gavin got his first bottle! he was sound asleep as jeramy, gavin's nurse and i tried to stimulate him to wake up. he was sucking pretty well but not quite strong enough to get much out of the bottle. hopefully, when we try it tonight, he will be more awake for his feeding. so, he will transition onto high flow canula for 3 hours everyday. once those 3 hours are finished, he goes back on cpap...regardless if he's doing well. the neonatologist described it as preparing for a marathon and we don't want gavin to get worn out. the thing about gavin is that he loves having the mask off his face that he could be collapsing down and not show many signs leading up to it because it is so enjoyable for him to not have anything on his face. ahh...the personality already....i love it!

so please pray that as the doctors evaluate his progress each day that we can move closer and closer to getting to the high flow canula full time. we know it is still a long road ahead as gavin has the sickest lungs they have seen. that's our reality. so, we push ahead, one day at a time, knowing that God is still at work and that His timing is perfect. i don't get it and jeramy doesn't get it....but we rest in the fact that God does. please pray not only for gavin, but for us as well. this has been quite the journey for us. the agony we feel every day is so real and unlike anything we have ever experienced. i have prayed the same prayer every day for 91 days. with joy, we have gone to and from that hospital twice a day to spend time with our precious miracle. i love our moments with him but i CRAVE normalcy. we are so weary.....at this stage we need people to love on us and lift our arms to Jesus when we are too weak to do so. we love you all and appreciate you walking alongside us throughout this journey.


Sunday, June 20, 2010

big day

i just realized it has almost been 10 days since we last posted. today is a special day for us. father's day and our 1st anniversary all packed into the same day this year! tracee and i had a wonderful chance to just relax and sort of unwind from all we have been dealing with. after all, gavin will be 11 weeks old tomorrow. he truly is a miracle and we can't lose sight of that. we still have to be faithful and remember to faithfully pray for gavin's lungs. they are bad. i mean, i guess it really gets put in perspective when they categorize his lungs as some of the worst lungs they have ever seen in the NICU. even though he has been moving in the right direction we have to remember that we still have a long way to go. he has been regressing a bit on CPAP and his oxygen requirements have been going up. i guess it's human nature to sort of ease up and relax and get to a point where you become content in your settings and adapt to your surroundings. but...we can't let up - we still have another 5-6 weeks to go and there is a lot of improvements that gavin needs to make before we can bring him home. it aches after time. we see babies come and go and while there is so much to celebrate there is so much for us to continue to ask for from our loving Heavenly Father on this very special father's day. pray for spiritual strength and tenacity to keep the faith and to remain in prayer and in the Word - that we may continue to learn from God during this time.
tracee and i had a wonderful time of celebration at dinner tonight for our multiple occasion celebration. she looked amazing and i am so thankful for her. she is the most amazing mom - i can't wait until she can display her skills full time! i am especially grateful to be a father and the wonderful life-long responsibility that comes with that. i have a son and that puts a huge smile on my face. a very happy father's day to all of you father's out there who read our blog - your position in the home and in your kids lives' is invaluable and integral to the family unit!
thank you thank you thank you to all who continue to support us in anonymous and known ways. we really couldn't press on and do this without you. we are looking ahead to the fact that we now have to move in about 5 weeks. not looking forward to it one bit, not gonna lie. in fact, i get tired just thinking about having to pack boxes and move. please pray for our move and a place for us to live.  if any of you know of a home for rent (at a great price) or of someone who needs someone to occupy their home for some reason, please let us know as we are actively searching. we have some areas that we are looking to be within but, we trust God to provide and to show us the perfect place for us to end up. after all....this is all a part of His plan even though it's hard for us to process it all right now!
just a thought: if it is ever hard for you to think about praying for us or to understand what we may be going through just imagine what it would be like to be without your child for a couple of days. how about a week? how about 2 weeks? how about a month? how about 2 months? how about 11 weeks? how about 16 weeks? when it is all said and done, barring a true miracle of complete healing, we will have gone without our child for 4 months. that's crazy pespective guys. that's crazy perspective for me and i'm going through it!!!
so please lift us up in prayer...we need it.

jeramy

Friday, June 11, 2010

long awaited update

sorry for the delay! things are crazy in our lives as usual. jeramy is back working at alliance financial resources which is the mortgage bank he worked for previously - providing financing for people refinance or purchase new homes. it's been a difficult industry for some time now but they have some exciting programs (some that other banks don't have) and he is working hard to build up his realtor partners and client base again. if you are in the market to buy or refinance or have a friend etc. - let us know and you can help support us in that way!
ok, now that we got that out of the way - gavin has been receiving steroids for a couple of days now to get him off of the ventilator for good! he is now 3 pounds 11 ounces and steadily approaching 4 pounds. just to give you some perspective, he reached 2 pounds on 5/14! we are so proud of how gavin has been doing and it becomes more and more exciting to go and spend time with him each and every day. tracee spends a majority of her day with him and really knows all of the ins and out of who he is. we love that she gets to do that because no one knows him better! he has been in an open crib for a little bit now and has been doing an awesome job of keeping his temperature. he loves his big boy bed! please be in prayer that gavin will continue to ween on his oxygen needs and that he will continue to grow and develop. he received another head ultrasound earlier this week and everything looked the same as the last one. he also received another eye exam and there are still no signs of abnormalities with ROP and his blood vessels still haven't connected to the back of his head. pray that all of that continues to go well!
on another note - when it rains it pours. having a child in the NICU alone is enough to stress you out of your mind. well, for us, we just found out that we probably will have to be out of our place and move by august 1st. hmm...i think gavin is supposed to come home around the middle to end of july...what great timing!! not really. sense the sarcasm in my writing - we are so stressed about where we will go and what we will do - we just started thinking about that as of today. it's sad for us as we just planned/prepared/ and finished gavin's room and now he won't get to enjoy it. we spent time and money putting that together for gavin and at this point it's all for not. i've got to say that we are being pulled through the most difficult time in our lives. we are just about ready to celebrate our 1st year of marriage on june 20th and we have seen and experienced things that most couples might never see in their first 20 years of marriage, let alone life.  we tend to wonder quite a bit these days. as i mentioned earlier, gavin alone in the NICU is enough - but apparently we have other things to continue to go through. with the loss of tracee's income due to short term disability (they don't pay her for that) and the ups and downs of the commission world of mortgage things appear pretty uncertain. it's hard for us to make plans when we don't really have the confidence right now to know what we are doing. but...we do know that with God, sometimes things aren't always what they seem. we  have to place our trust in that right now and trust in Him to make a way. we are so drained on every level: financially, spiritually, emotionally, physically - that's just being real.  but...we will not lose hope. we will continue to act, as best we can, in the face of uncertainty.
we are so thrilled with gavin and his special life. he is our miracle and one of the most amazing blessing we have ever received. pray for us friends and followers. we're having a difficult time with the stresses of this life right now but trust that things are seasonl and for a time. we look forward to sharing many additional blessings with you in the future, we just need to encounter them!!!

Thursday, June 3, 2010

nursery - part 1

jeramy and i originally painted the nursery green (safari green). once gavin came into this world though, the color of his room didn't look right. it didn't seem to fit him. we wanted to do something classic and simple instead. this is obviously a big step for us in beginning to prepare for gavin coming home one day. it was really hard for us to get to the point where we felt confident about his progress. the doctors, especially during the first month and a half, never mentioned anything about him coming home one day. i know that things can change at any moment and when gavin was in such critical condition, the last thing they wanted to do was give us false hope. however, we now feel so confident that he will come home with us one day. when?? well, that we don't know yet. we thank God every day for the progress that gavin is making and we know that without Him, none of this would be possible. it is with great joy and anticipation that we now begin the early stages of getting our house ready for our little boy.

we decided to go with blue on the top. the color is called "crystal waters"...it's absolutely precious. the bottom is an antique white and is called "ivory mist". my brother in law ryan, who is quite possibly one of the handiest men i have ever met, put up a wooden paneling as well. it looks exactly as i wanted. what do you think??


i will keep you all posted as things progress. next step.......furniture!


Tuesday, June 1, 2010

3 pounds!

that's right!! gavin officially weighs 3 pounds today. they gave him another dose of lasics this afternoon while i was there because he does look a little puffy. one of the main reasons they give him lasics is to help with the fluid in his lungs. the lasics will help rid his body of any extra fluids. tentatively, they plan on giving him lasics (one dose) every few days. i say "tentatively" because, as you are all aware by now, things are very subject to change every day in the nicu. he is still stable on the ventilator, which is such a great sign since he has been off the steroids for quite sometime now.

their "plan" for gavin is to get him on to c pap in the next two weeks. their hope, and ours, is that once they get him there, that he will stay extubated and continue to make progress toward nasal canula (he can go home on nasal canula). because gavin is still requiring a moderate amount of oxygen on the ventilator, they may decide to do a short, two-day burst of steroids (our fourth round) right before they extubate him. obviously, our hope is that God intervenes for gavin and that he can show the doctors that he has enough strength to withstand the change and for his lungs to have the strength they need to breathe while on c pap. please pray along with us for that...

we started swaddle-holding gavin this week (i call it holding him like a "real" baby...ha ha). it is so different than kangarooing with him. the connection is so much better since we can see his face and he can "see" ours. here is a picture of jeramy holding gavin two nights ago....just precious!


the nurses all say how big he is getting, whenever they are off for a period of time, they come back and ask things like, "did that baby eat gavin?" we love his nurses. they are the best. every person in that nicu is the best. they save his life every day. how do you even begin to thank someone for that?

jeramy and i are doing well...i still cry every day (which is totally normal as a nicu mom). lately, i have had some happy tears, which is a nice change of pace. jeramy went back to work at his previous company, still working as a mortgage broker. our schedule is a little different now. i go to the hospital around noon and do his cares and sometimes hold him. i am usually there until around 4:00 and then i head home to start on dinner. jeramy gets off work around 6:30, we eat dinner and then head to the hospital for his cares at 8:00. we usually get home anywhere between 10 and 10:30. it usually makes for a pretty long day but it's definitely worth it.

as always, we thank you tremendously for your prayers, your love and support.

"for I am the Lord, your God, who takes hold of your right hand and says to you...do not fear; I will help you."
Isaiah 41:13


Thursday, May 27, 2010

a little bit of everything

gavin finished his third round of steroids twelve days ago and he has pretty much been able to maintain his ventilator settings. they have been able to ween some of his settings on the ventilator and our hope as that with each day, he can put on more weight and move closer and closer to being on c pap. he is still tolerating his feeds, getting 27 ml every 3 hours. it takes him an hour and a half to eat all of that so he basically just eats all day. no wonder he is growing! he now weighs 2 lbs. 11 ounces. in addition to tolerating his feeds, they stopped his morphine, which he was only getting once every 24 hours. so now, he only has his e.t. tube and his feeding tube. there are no iv's, no picc lines...NOTHING in his little body. we love that. they are drawing occasional blood gases so he does get pricked every now and then but not nearly as often as he was before!

gavin is so alert. when we talk to him, he looks our direction and will open his eyes. we love that. it definitely makes us feel more connected. the eye doctor came in to look at his eyes since premature babies' retinas aren't attached. he checked to see if the blood vessels are making their way toward the eye. the vessels haven't reached yet, but as of his first check, it doesn't appear that anything is abnormal. the eye doctor will check him every 2 weeks to see how the vessels are progressing and to check for abnormalities.

another step we have coming up will be moving gavin to an open crib from his incubator. there are a variety of things that the doctors like to see happen before this occurs. they like the babies to be about 1800 grams (gavin is about 1200), be able to regulate their body temperature (which gavin is pretty much doing...), and they prefer that they are off of the ventilator. we obviously don't want to push any of these steps with gavin since he is progressing so well. they are beginning to pull back the blanket on top of his incubator so that gavin can begin to adjust to day/night. this is super exciting to us....steps forward indeed! another reason that we don't want to push him into an open crib too soon (not that it's up to us anyway :-) is that gavin is still very sensitive to noise and when he is outside of the incubator/has the cover off (which helps muffle sound), he tends to de-sat and require more support. the more mature he gets, the better that will be.

we are extremely pleased with gavin's overall health. he is getting so big!! he still is occasionally having his breathing episodes (bronchial spasms) where he needs to be bagged. those are extremely scary for us. also, he extubated himself the other night 2 or 3 times. please pray that he keeps his tube in and that his lungs continue to heal and get stronger and stronger, which will help him with the bradys and the spasms.

thank you so much for all of your prayers and support, as always. i cannot stress enough how blessed we feel...

Great is His FAITHFULNESS!


Monday, May 17, 2010

a picture of perfection

here is a recent picture of gavin...wide awake! some of you have seen it but we wanted to make sure that all of our faithful followers got to see him!



is it just me, or is he perfect? :)


music to my ears

i love music and i love how God uses it to speak to me. it's crazy how i can hear a song numerous times and never really have it resinate with me until i face some type of momentous occasion, whether joyous or painful. obviously, in this time in my life, it's the painful moments that have me looking closely at the lyrics in a song. i remember hearing this song on my way to the hospital one morning last week. as i was driving down the 101, i had a beautiful view of the mountains and desert and i was thinking about just how big everything that God made really is. i have to be honest that i found myself frustrated. why was it that my God, who is so big and has created the heavens and earth, still hasn't "stepped in and saved the day"? i know that it's not because He can't. if that was the case, i wouldn't be frustrated. i'm frustrated because i KNOW that He can. i find myself frequently crying out to Him, "What are You waiting for?!". i don't have the answer to that....i don't think anyone does. but i think it's okay to be frustrated and to voice those frustrations to Christ. lately, i'm finding that transparency with God is a good thing...something i've never really experienced with Him before. and at the end of each day, even when it's "still raining", i CHOOSE to praise Him in this storm. please read through the lyrics (even if you've heard the song a hundred times). i think it is the most honest plea with Christ that still has a man bowing at the feet of Jesus amidst his misunderstanding.

"Praise You In This Storm"

i was sure by now
God You would have reached down
and wiped our tears away
stepped in and saved the day
but once again, i say "Amen", and it's still raining

as the thunder rolls
i barely hear Your whisper through the rain
"I'm with you"
and as Your mercy falls
i raise my hands and praise the God who gives
and takes away

and i'll praise You in this storm
and i will lift my hands
for You are who You are
no matter where i am
and every tear i've cried
You hold in Your hand
You never left my side
and though my heart is torn
i will praise You in this storm

i remember when
i stumbled in the wind
You heard my cry to You
and You raised me up again
my strength is almost gone
how can i carry on
if i can't find You

but as the thunder rolls
i barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
i raise my hands and praise the God who gives
and takes away

i lift my eyes unto the hills
where does my help come from?
my help comes from the Lord
the Maker of Heaven and Earth

days when my strength almost feels gone, just like the song says, He gives me just enough to get through it. i believe He speaks in ways that i'll understand. lately, for me, it's been through music. for those of you who may have never heard this song before, i added it to the playlist on the blog. love you all!


feed me! feed me!

let me start with some good news: gavin loves his food! i realized since we wrote last that he was just about 900 grams. as of this morning he has broken through the 1 kilogram milestone and is now sitting at 2 pounds 4 ounces! that makes all of us so happy!! he continues to tolerate his feeds and he is now up to 22 ml's every 3 hours spread out over a 1.5 hour feed. so...he basically is eating all the time. he continue to poop and pee very regularly and that is AWESOME for these micro preemies. he has been averaging about an ounce a day over the past 3 days and that is such a thrill for mommy and daddy.
he continues to have some bouts with the bradycardia's we mentioned last time and there is no way to sugar coat those, they are darn scary. yesterday he had one just after we were helping do his cares about 2:30pm and it just came out of nowhere. all of a sudden there were 5 people bedside and my folks and tracee and i were just watching and praying as they brought him back. it is so tough for us in those moments but if you were to look at him afterwards, you would never be able to tell he just had a major scare! he is always wide awake and looking around - probably thinking "what are you guys all doing staring at me? i'm fine." you give us all a run for our money gavin!!
he continues to get his antibiotic (day 4) every 8 hours to fight the infection in his body and for tracee and i we sense that he is still sick. they had to move his IV from his head to his arm as the catheter wouldn't flush any longer; it had become kinked. they increased his pressure settings on the ventilator this morning because his CO2 levels were a bit elevated and the continue to work with gavin's lungs.
once again we update you all and ask that you continue to pray for his LUNGS. he is now 4 days off of the steroid and we PRAY that he can continue to maintain the levels he is at so they can grow him on the vent and get him bigger and stronger in preparation for CPAP down the road.
yesterday tracee and i sat in church and listened to a wonderful sermon on abiding in God. that word abide can also be translated as remain. it brings comfort to both of us to know that God remains in us at all times and we have to make a conscious effort to remember to remain in Him.  what a faith building exercise we continue to go through!
a dear friend of mine gave me a book called The Red Sea Rules: the same God who led you in will lead you out by robert j. morgan. for those of you who don't know the leadings up to the point where moses parted the red sea, and the israelites walked through to safety on the other side, it was looking pretty bleak for them. the egyptians has allowed their israelite slaves to go and, led by moses, they sought out the promised land with God's direction. a long story short, they ended up encamped next to the sea with mountains surrounding them on either side, the sea in front of them and the egyptians pursuing them from behind. God led them to this place! well...we all know the miracle that took place and the sea was parted and the egyptians in their pursuit were swallowed up by the sea just as the israelites all reached safety on the other side. the impossible way of escape was made possible.
in the next to last chapter of this book, it talks about faith building. "Lord, increase our faith. Lord, I believe; help Thou mine unbelief."  God grows faith in us, just as he is growing gavin's little body now. how? the book states that like any good teacher, He bestows truth, then devises tests to review and reinforce that truth, to transfer and translate it into lasting, life-changing experiences. it's like He is the coach and we are the players. we take His Word in scripture and use them as the plays and the rules and then we practice and scrimmage and re-review, etc. in this process we go from being good players to skilled pros. little faith grows into great faith.
i am not saying i have this all down! not at all! the thought crossed my mind yesterday as i sat in church: "why can't i just trust more?" i doubt all the time!! but God's grace carries us through and we continue to practice some more.
our concerns for today and over the next couple of days will be his lungs and how they will have to support him with his settings. continue on with us as we trust God for His timing and His healing hand upon gavin's body. guys, i cannot begin to tell  you how beautiful he is! what an amazing kid. we long for the day to bring him home. thank you for your help in sustaining us in our weaknesses and our frustrations. please continue to reach out to us and support us as you feel led - we feel so good to know that you are there.  THANK YOU!

jeramy

Thursday, May 13, 2010

bradycardia

well...we continue to ride the rollercoaster. up and down and around and around. that just seems to be the typical stint in the NICU for a baby like gavin and for being as young and premature and sick as he has been. there are a lot of things to be very thankful for though. he is doing phenomenally well on his feeds and is up to 20ml's of food every 3 hours and has now gone to 26 calorie which is a fortified feed. the doctor explained to tracee yesterday that the equivalent of what he is getting would be like me ingesting 15,000 calories a day! his little body is clearly needing it as he did drop 10 grams overnight so he sits just under 900 grams.
please pray, pray, pray for his lungs still!! he has had what they call brady's over the past 3 days which are due to some bronchio spasms occuring where his airways just shut down and he needs to be bagged to inflate his chest and get him back on track. this is a very scary thing for us and i'm sure for him as well. please pray for our peace as we continue to trust in God's healing for gavin and for his lungs and freedom from these episodes.
gavin is scheduled to get some blood today and then have his pic line taken out later on. he received his last dose of the steroid this morning and we PRAY that this will be enough to get him over the hump!! he is such a sweet boy and already has an amazing personality and a drive to live and pull through. we get so tired of having to go through this over and over again - we don't want to hear talk of any more steroids!
please stand with us in these prayer requests. we know that there is a lot of power in prayer!

jeramy